P96 Survey of paediatric respiratory physicians’ experiences of respiratory care and transition of patients with neuro-disability

Abstract

<h3>Introduction</h3> The number of children with neuro-disability surviving childhood and transitioning to adult services continues to grow. These children have complex needs, and many have respiratory issues including recurrent chest infections, aspiration, scoliosis and disordered breathing. Despite this healthcare provision for these children and young people can be variable; and the process of transitioning to adult services can be unclear. We sought to explore these issues further through a survey of experiences of UK paediatric respiratory physicians. <h3>Method</h3> A survey link was sent out to members of the British Paediatric Respiratory Society with ten questions pertinent to the outpatient respiratory care and transition of paediatric patients with neuro-disability. <h3>Results</h3> There were 22 responses in total for the survey. The majority of patients were seen in a general paediatric clinic, and just over 50% of patients had access to a specialist nurse or respiratory physiotherapist in clinic. Most patients are transitioned at 18 years of age, with the majority being referred to a respiratory physician at a local secondary care hospital. For some clinicians the choice of where to transition to was determined by clinical need. The majority of clinicians reported a lack of clear transition pathway for these patients and felt the transition process was inadequate. Further results are shown in figure 1. <h3>Conclusion</h3> This limited survey provides a snapshot of respiratory care of paediatric patients with neuro-disability. It reveals the variation in care and access to multi-disciplinary team input; which arguably should be available for all patients. It also highlights the lack of a clear transition pathway for these patients to adult services, the variation in patient experience – and the fact that the overwhelming majority of physicians feel that the transition pathway is inadequate. Many of these patients are likely to experience ongoing and deteriorating respiratory issues into adult life. It is important that this gap in care is addressed to improve not only patient care, but to also prevent hospital admissions – which may be avoided if the basics in care and transition are addressed. Further work is needed to address these inconsistencies.